Oh the Waiting

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Received cancer diagnosis 21/12/23  following recall from first screening mammogram 14/11/2023, aged 50.  Right breast invasive lobular cancer grade 2, ER/PR8 and HER2 negative. Left breast however had calcifications which were biopsied. Biopsy results showed no sign of cancer but abnormal proliferation of cells. Consultant required vacuum assisted biopsy of the area which I had done 12/01/24. Alongside this due to lobular I needed MRI to check 1) size and 2) that it wasn’t anywhere else - MRI revealed further ‘suspicious’ area on left side which was also biopsied 12/01/24.

Its now 02/02/24 and I still don’t have a treatment plan due to biopsy results (left side) not yet back.

The waiting is really starting to get me down. My mind is travelling to some very dark places and I don’t know how much more of this I can take. Can anyone advise is there a standard or a timeframe the NHS have to stick to? What happens if they don’t meet their time ‘targets’? I really don’t want to make a nuisance of myself and I don’t even know whether hassling the lovely breast care nurses every day has any sway?

What do people think? What should I / what can I do? How am I going to get through this?

  • Hi SK67,

    My biopsy result was ready in 2 weeks time, but I know that sometimes it takes longer. Don't be shy and keep asking, nurses are brilliant and so well aware of how frightened and terrified we are especially whilst waiting for test results! Most importantly, try your hardest to stay positive! Easier said than done, but staying positive does help. When I was diagnosed with breast cancer in June 2023 I thought I would never laugh again, but here I am almost back to normal after finishing my chemotherapy and radioterapy (last session today). You will feel better once your treatment plan is in place. I wish you all the very best with your treatment!

    Lana xx

  • So sorry you have been diagnosed with breast cancer. I had lobular last year and, looking back, the stage where you are right now was the worst part. It seemed to last forever at the time.

    As I understand it the target they work to is treatment starting within 62 days of referral, and I don’t think there’s any recourse if it doesn’t. They are under-resourced. Although the delay may be due to your results having to be discussed by a multi disciplinary team before they can be released.

    I would think you won’t have much longer to wait. Hang on in there.

    Hugs xx

  • Hi Lana. Great to hear that you have had your final radio today! How does that feel? Hope you can celebrate this positive milestone this weekend. Thanks for your kind words. Will keep on keeping in touch with the BCNs xx

  • Thanks Raedd. It’s a bit of a ‘jigsaw’. MDT is only on a Thursday morning so if results aren’t in by the Tuesday at 4pm then you dont get air time in the MDT!! Consultants see their patients THurs afternoon and FRi am following MDT. That said I did check with breast care nurse earlier and biopsy results aren’t even back with them yet….so am hoping they arrive Mon/Tues or that will be yet another week I have to wait. It’s driving me mad……but yes you are right I just need to find a way to hang in there (without losing my marbles!!)